Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Monday, December 14, 2015

This Day 2009 vs This Day 2015

Hello Everyone!

OMGeeeeezzzz!!!!
I have some great news! But that will come later on 12-15-15

Because I must first note the fact that 6 years ago today December 14, 2009, was my very first STUNNING, UNREAL, UNBELIEVABLE, SERIOUSLY I'M IN THE WRONG PLACE, There Must Be a Misunderstanding, FIRST APPOINTMENT IN HEMATOLOGY ONCOLOGY.
This place has been my medical second home for 6 crazy years now. So hard to wrap my head around this 6 year cancer journey I've been on, and that I really have myeloma. I was a really sick girl 12.14.2009, and had NO idea what was ahead of me. Simply amazing I am still here 6 years later.


But when I checked in at this very same counter today, with my favorite check in ladies, and headed to the Chemo Lab, with my incredible chemo nurses, for Kyprolis infusion #8, week #2, month #2, it was a very different emotional experience than 12.14.2009.

I've been through sooooooooooo much since 12.14.09! Much of it reflected here in this too honest, sad, funny, poignant, ironic, philosophical, too wordy, reflective, hopeful, sincere blog. And I deeply thank all of you that have taken an interest in my story and checked in to read my musings whenever you have.

December 2015 has brought very different news than December 2009! I truly am incredulous about the news I will share tomorrow, 12.15.15
I should have been braver sooner!
Kyprolis + Dex is currently saving my life, as Revlimid + Dex once did for so long (and Cytoxan and Melphalan prior to SCT).

This paperwork holds very encouraging statistics! I looooove you Kyprolis, and you too Dex, even though you make me feel falsely good for 48 hours, then crash me like harsh waves against a rocky, jagged, painful cliff.

So after we came home today from my Kyprolis infusion, even though it was super cold outside, I bundled up and went outside to feed, pet my horses, and "clean" the arena (don't tell my oncology staff lol). I feel so alive today! (Yes, thank you Dex steroids!) Grateful to be breathing in, inhaling the fresh crisp air, while marveling at my new lease on life, and how blessed and fortunate I am to be responding to treatment so quickly! I love you Kyprolis! Thank you for giving me another chance!



Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!

 

8 comments:

  1. Hi Julie,

    I follow your blogs on the Beacon. I am so happy that you are getting results from Kryprolis!!!!! I think you are a beautiful person inside and out, and I am hoping your response continues and you are able to share your wonderful personality with all of those around you! Happy Holidays to you and your family!
    Regards,
    Ellen Harris

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    1. Hi Ellen! What a sweet comment! Thank you! :) And thank you so much for following my blog and letting me know you enjoy my writings and musings! I love knowing who checks in, and I appreciate you mentioning you found me thru the Myeloma Beacon. I love that site too. Your comment made my day! Happiest Holidays to you and your family too, and let me know if you have a blog I can follow. Thank you Ellen!

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  2. I'm so excited for you!!! what are the numbers??? remember we all love to see those numbers:)

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    1. Hi Christina! Thank you so much for checking in and for all your support and encouragement. Hoping your treatments are going well too!

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  3. Julie,
    Great news on Krypolis. So happy for you. I've emailed you before. Love reading your blog and its positivity. My husband, Curt, has MM. It is in check, but numbers keep increasing. We found you really have to keep on top of it and your Drs too. So sad about Dr Lee. You could tell from her pics that she was a wonderful person. Be well.

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    1. Hi Wendy! Thanks for checking in and for all your support! What treatment is Curt on? I've learned from my recent change, that if our #s are increasing, it's certainly worth looking into a medication change. And yes, Dr Lee's passing is such a loss to my oncology office. Life is just so inexpiable. Let me know if you have a blog I can follow, and I wish Curt the best in his treatments. Change is ok, I've learned :)

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  4. The numbers are increasing very minimally and we will talk to the Dr next month about a possible med change.
    I don't have a blog, but perhaps I should start one. Thanks so much for all your good wishes. We live like all is very normal, which in a way it is. Tonight we're going out for Japanese food, even though it's cold and rainy. Heading to Palm Springs for 10 days in February. The winters here a bit much!

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    1. Hi Wendy, thank you for the follow up details about your hubby. Yes start a blog, it's very healing and fun and look at all the "friends" I make :)) And yes, the "trying" to live as "normal" as we can! Go you guys for good food and travel! Hopefully "el nino" won't affect your west coast travel plans. Thank you so much for checking in and back in! :) And have your hubby talk to his Dr about Kyprolis! Happy Holidays too!!!

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My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!


What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)

Infections

Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.